Understanding and Supporting the Transition to Adult Care Among Youth Living with Perinatally Acquired HIV in India: A Community-Based Participatory Research Approach

Abstract

ABSTRACTBackground: India has one of the world’s largest populations of youth living with HIV (YLHIV), yet their experience of transitioning from pediatric to adult care is poorly understood, particularly for youth raised in residential childcare institutions. Existing transition frameworks, largely derived from high-income settings, emphasize individual clinical self-management and may overlook the relational and cultural dimensions shaping transition in low- and middle-income countries. Objective: To explore how YLHIV in India conceptualize growing up, independence, support, and readiness for transition across clinical, psychosocial, educational, employment, and housing domains. Methods: A community-based participatory photovoice study was conducted at two Karnataka sites — Bengaluru (family-based and institutional care) and Belgaum (institutional care). Sixteen YLHIV aged 13–22 years (6 female, 10 male) completed orientation, photography assignments, and peer-facilitated focus group discussions. Transcripts were double-coded using a hybrid deductive-inductive approach (29 codes; Pooled Cohen’s Kappa = 0.66, with all remaining disagreements resolved by consensus). Results: Participants framed independence not as individual autonomy but as relational capacity to support family, reflecting collectivist values. Psychological “peace” emerged as central to successful adulthood. Although age 18 marked formal responsibility onset, participants advocated for earlier, developmentally-staged preparation. Stigma and non-disclosure limited help-seeking even within supportive networks centered on family and institutional caregivers. Institutional-care youth described anticipatory grief about losing caregiving structures and community at discharge. Photovoice surfaced embodied experiences invisible to standard methods. Conclusions: Transition programming for YLHIV in India must be multidimensional, relational, culturally grounded, and developmentally staged from early adolescence, with targeted support for youth leaving institutional care. Findings will inform context-relevant transition readiness tools for LMIC settings.